Life with Phoebe Heaven-Side

Circle

My little “bright, illuminated light” grows dim. It is almost imperceptible and then suddenly I realize that she is different. She doesn’t eat anymore, a bite of ice cream and then it melts in the bowl, or she carries a popsicle around until she decides against eating it. Suddenly- no need to stock her beloved pistachios- “stachios”, her tortilla chips or Cheerios. And she stares..off into a faraway place at times and I can’t call her back with my voice. Only my touch brings her back to me. Could be small seizures says Jan, our hospice nurse, but maybe not. She has a more difficult time completing sentences and loses her train of thought. And today:

She makes comments like this more and more and I wonder how thin the veil is becoming.

You know, when a light flickers just before it goes out? This is that. She has these moments of breakthrough clarity and tells me amazing things. And then she grows dim again. She speaks less, shuffles. She fell yesterday. And somehow I can get up and brush my teeth. Sufficient grace. Calm before the storm. I try to brace myself for what’s coming, ready myself for impact.

I have scrubbed this house from floor to ceiling, and there are 5 new bulging trash bags worth of stuff at Goodwill. I am nesting in reverse. Planning for the days I can’t get out of bed and face the world, when the sun is too bright and the birdsong outside my window doesn’t match the ache I feel inside. I am not unaware that those days wait for me. I have been there before, but this will far surpass those depths.

Jesus is in the depths. I know He is. I will find Him there, partake in His sufferings. There will be new insight. Hard earned.

I find myself needing to protect the time we have with her. The time for sharing is ending and the time for staying close is here. My mother love will orbit her, do what more I can do for her. I imagine it will be like in those first days, in our bedroom in Mexico, when the night breeze blew the leaves of the Jacaranda tree on our patio and in through our window where I nursed at 2 am and 4 am. By moonlight I stroked her head and marveled that at last I had a daughter.

In my mind I imagine a peaceful transition. I know it often isn’t so. Please pray for peace for Phoebe. God is already so obviously present with her and that comforts me to no end.

`Amey

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About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th.
A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle".
We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms.
We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated.
Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope.
Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

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I’m crying. Tears of sadness for you, your family and tears of joy for Phoebe is feeling, seeing and knowing Jesus. My heart is aching for you mamma. Praying and praying for you too, to sleep in the peace of Jesus’ arms. Lifting Phoebe up to Daddy asking for Him to heal her here on earth.

Amey, my heart aches for you. Prayers for peace for Phoebe continue although it seems she has found her peace in Jesus. I know that you too have been wrapped in His love and grace and I pray that He holds you and your family ever so tightly as you walk down this road. Really nothing more to say; just know that the love of Christ will see you through this. With love to you all.

I cannot even begin to imagine where you and your family are emotionally at this moment. But one thing I do know is that you are experiencing the “mercies of God”, and a “peace that passes all understanding” that enables you to share this time of your lives.

We don’t know one another, except through your beautiful Grandparents, Jean and Zig, who I call friends.

I am a Mom, and a Nonnie, that has NEVER walked in your shoes, not even at a distance, but know that our Lord and Savior stands in the midst of the hurt, pain and overwhelming sense of powerlessness you and your precious family are experiencing.

Please know that along with the multitude of prayers that are being said for little Phoebe and her family, our family has united together in prayer for God’s sustaining grace, love and unexplainable peace! And, that the Holy Spirit will comfort each of you with His Holy Presence as never before.

I read His grace and mercy in each word you write and have no doubt that other families that might perhaps be experiencing a similar situation, are seeing Jesus through those words, at a time when words fail most of us.

Our prayers and love will continue to go forth for relief for Phoebe’s pain and healing, and for God’s “special touch” in meeting each individual need within your family.

Amey, thank you for to allowing us to journey with you. We love Phoebe and your family. It is a comfort to hear Jesus is close with her. Praying His peace over her and your family. You are so wise, Amey, to pull in mad cherish each moment.
My mama heart aches with yours. Sending you love and continued prayers. –Jeannie

Phoebe’s light will always shine. She has brightened so very many lives with her pure, clear, luminosity. That will change, but will never be extinguished. It will be wherever you are and all of us who have followed your journey have been touched by the radiance too. Phoebe has blessed us.

I can understand what you feel. I lost my sister, who I told everyone was my baby from the time I was 2, two weeks and two days ago. The night after her funeral, I dreamed of her. She came to me and told me that she was with Jesus, and was in perfect health, and that I shouldn’t feel sorry for you anymore. “Don’t feel sorry that I didn’t get to live as long as you wanted me to. I am getting to do the unimaginable up here!” From that moment, while I miss her terribly, I am not sad that she isn’t here with me, but I long for the day that I am with her. I am so sorry for what you are going through, and I pray that God allows you the same comfort that I found.

Thank you for sharing your beautiful words about your precious Phoebe. She has impacted more people in her short time here than we can ever know until we met our Savior and Lord. Just yesterday I was sharing about Phoebe to our truck driver on Cape Lookout, NC. This husband and wife who lost their 33 yr. old daughter to a “very rare” form of brain cancer. This stranger to us, shared how much her daughter loved Jesus, and shared about Him until she passed into His arms. She said she had AT/RT. I was able to hug her and share about Phoebe and how much she and her family love Jesus. Thank you for allowing us to pray for you and your precious girl. We will pray without ceasing for you all. We love you in Jesus’s precious name. Phoebe has changed people lives with the Hope of Jesus all over the world!

Love…Blessings…Tender Care of Our Father God…
Total Restoration for Phoebe to Fulfill All God’s Plans and Purposes for Her Here in Jesus’ Name…
Dearest Love Upholding All of You in This Season…
Thank You, Jesus, for Being So Near And Comforting Phoebe ~ Please Extend Your Comfort to Amey, Nathan and the Boys…Amen and Amen!

I am praying for her peace and for your comfort. You are both already so strong. You are such a beautiful mom to her. I’m sure it’s through your love that she is able to recognize and welcome the Love of Jesus. But my heart is breaking for you… I’m so sorry that this is happening at all.

My heart aches for you Amy. Today, I can barely write this note to you as my tears just won’t stop. Know that I will be praying for you as you continue on this journey and will be here for you no matter what. God bless and comfort you Amy and your beautiful family. Hugs, Marilyn

Amey, our prayers for you and your family continue. Your words are strong and comforting to us while I feel we need to be strong and comforting for you. God will continue to give you strength. Phoebe’s words are powerful and comforting. Thank you for sharing with us. We will continue to hold Phoebe in our hearts and prayers.

Praying peace and comfort for Phoebe and for your family. She is in our prayers and thoughts always. Thank you Amey for sharing your journey with us. God is being glorified through your family. Love you all.

As the tears fall I want to write to you. To somehow express something of the deep things I feel right now. Sadness for you all to have to come to this place, comfort in hearing that Jesus slept with this precious girl, thankfulness that my children have learned a lot about prayer through following Pheobe’s journey, ….. So much more… It is all so intense. I can only imagine how much more so things are for you. Each of you. I cannot find words to so express…. So I will just say that I am praying. I love you all and we are praying. For each one of your family. I am asking Bod to give specific request to the hearts of people at the moments that each of you need someone to hold up your arms!

You don’t know me–friend of a friend of a friend. But you have touched me deeply. I just want you to know that Phoebe’s sweet faith and your vulnerable strength call to a place in me that is alive with hope and faith. I pray that God’s mercies are new, not just every morning, but every hour, every minute. I pray He surrounds you with His peace. I pray for understanding and acceptance for your other children. I pray for an intimacy and closeness for you and your husband that can only come through a fire like this. I pray that in all of this, you will know the greatness of the love of Christ; that you will have the answers you need and the grace to cover the answers that never come. You are beautiful, and Phoebe is an amazing little girl. How blessed she is to sleep with Jesus and to know Him so well; how awesome she is to face her pain so bravely and wisely. Praying with you for a sweet, peaceful transition.

I don’t know you, but you have touched my soul “in the midst of your journey”! I HAVE my healthy little ones right in front of me…AND my grown ones…and STILL I struggle to FIGHT my desire to escape and be disconnected because of depression and my menopausal emotions. Many days when I am struggling to NOT disconnect, I read your blog and the Lord uses your words to help me focus on what’s really important. You have taught me to be grateful…NO matter what my world looks like! So often my kids and I pray for you and your family…and for Phoebe. I’m sorry you are walking through this, but I want to thank you for being willing to be vulnerable on such a difficult journey.

My sentiments are like those that have written before me…those that don’t personally know you, but have grown close to your family through the prayers I have prayed. So many things your lives have taught me. Each post reminding me of the precious time we have to touch the lives of the ones we love…to not waste time on words that don’t edify, encourage or build up. Life so precious…life worth fighting for…sometimes with energies we don’t have. There are no words to express the deep sorry I have for what your family has and is experiencing. I appreciate the confirmations of God’s presense in Phoebe’s life and pray they will continue to be there to comfort you and to guide you each day.

I’m a stranger in your prayer circle — pretty far away, but I’m thankful that God hears everywhere. Jesus is not only sleeping with Phoebe now, but we know He is with you in your grief. Thank you so much for writing about the miracle of heaven in the midst of pain. When we see Jesus face to face, I will so want to meet you and your Phoebe and we will rejoice in the love and mercy of our Lord in the darkest times

You are in my thoughts and prayers. I read your entries and cannot imagine what you are going through, I am just grateful you find the strength and comfort to do it every day. Know that she will always know your circle of love – and you hers – even after she’s not physically here. Such bonds are never broken, He has made it that way.

You are ministering to the Body as you share “in the fellowship of His suffering.” Oh Maranatha, Come quickly Lord Jesus! Bear us up to trust You in the suffering. Bear up this precious family seeking to walk by faith, not by sight.
YET we will trust You.

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come mingle with each other. The someone at my sides says: “There, she is gone!” “Gone where?” Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined part. Her diminished size is in me, not in her. And just at that moment when someone at my sides says: “There, she is gone!” there are other eyes watching her coming, and other voices ready to take up the glad shout: “Here she comes!”…And that is dying. ~Henry Van Dyke

Amey, my heart aches for you so so much. You have a magical way of writing, a faithful way of expressing and a loving way of saying the most didifficult things in the most easiest ways.
My tears just rolls as I read your notes. And I stand stronger in prayer for you, Phoebe and your entire family.
I pray Jesus will comfort each one of you. And stand by Phoebe sides to give her all the comfort of HIS love.

AMEY MY HEART IS BREAKING AND TEARS ARE FLOWING PHOEBE IS SUCH A VERY PRECIOUS CHILD OF GOD SHE IS BEING COMFORTED BY HIS LOVE YOU CAN JUST TELL WHEN SHE SAYS SO MANY DIFFERENT THINGS . SHE IS AT PEACE NOT AFRAID I AM PRAYING SO VERY HARD FOR DEAR LITTLE PHOEBE AND FOR ALL OF YOU THAT LOVE HER SO VERY MUCH. I KNOW I AM NOT THER WITH ALL OF YOU YET SOMEHOW I FEEL AS IF I AM A PART OF ALL OF YOU LOVING AND CARING. I THINK OF YOU AND HOLD YOU IN MY HEART AND PRAYERS GOD BLESS MY DEARS MAY YOU HAVE COMFORT

You don’t know me but I pray for Phoebe-my hearts breaks for you during this time, and I can truly relate because I just lost my husband to brain cancer in June. .I am so grateful that Jesus is manifesting Himself and will be keeping her safe until we are all together. This is why we must “hasten the day…” May God hold you as only He can

My heart aches Amey. I am brought to tears for you, for Nathan, for your boys and for Phoebe. Knowing that Phoebe loves JESUS does bring comfort, but it does not take away the pain. Knowing that your grandpa is there with JESUS, and Phoebe will be with them brings comfort, but that also does not take away the pain. My heart aches for you. Thank you for sharing your feelings openly so that we, your prayer family across the world can pray for you. We are praying… that also does not take away the pain… but it does bring comfort and it does give you strength. We are all holding your arms up as you all fight the battle of saying good-bye. You will survive, but you are forever changed… broken but with and for purpose. Phoebe has touched so many lives. She has been used for the Kingdom well past her years old. She IS a miracle girl and GOD HAS shown off on her bahalf. Our heart is that HE will heal her and either way, HE will. HIS way is best, I know you know that. So we pray and ask GOD to be everything you need at every moment………and you are not alone. It has been a privilege to be invited into your pain. Thank you for the honor of holding you up. My arms are about you sweet girl. You are on holy ground……take your sandals off and snuggle your princess. xoox

This light that God has given you in your precious Phoebe…it is in you all…it is the light of His love, and I have never seen it so visibly as I do in your family. Know that as her earthly light dims, you all still have His light and He will allow it to glow and sparkle and ignite for each other and those in your midst. Prayers of mercy from the darkness that tries to hide the light. Love to you all!

I think of you and Phoebe daily. I am one of those people you touch with your unrelenting faith and strength. I am in awe of how close Jesus is with Phoebe now, filling her with his presence. You and your family are truly an inspiration and i will continue to pray for God’s peace. Thank you for sharing, even in the hardest of times…you touch so many. Much love and prayers!

Amey and Nathan,
I am sure you don’t remember me but I did DTS, SOE in 2000 and 2001and then came back in staff for a small while. I’m sure you don’t remember me because I was quiet and struggling to know if ywam staff was the right fit for me. But I remember who you are. So sweet, and lovers if God. My husband and I lost our 7 week old son and we found him having suffocated during his sleep. We have been in a tailspin for 4 years and I remember that day often. I find myself almost angry that not everyone has fine through what I have. Not that I would wish a loss of a child in my worst enemy but the fact everyone just goes on like your child never existed, or that no one knows what’s going on in the turmoil of your head. As I started seeing posts on fb from your blog I have now often come to see if anything is posted and every time I cry. I cry because while you can’t compare one loss of a child to another…. It still is different. When I found my son dead its a horrifying memory that haunts me but to even try to wrap my head around the fact you are WATCHING the death happen and the utter helplessness I felt in my situation pales in comparison. Your faith, your outlook and your ability to prepare is truely only from God and your touching ppl with your family’s story. I pray for strength for you as parents as you go through this. Know you have many prayers going out. God Bless and know your angel will be watching over you for the rest if your life just like mine is and I’m often reminded of this with the way butterflies are drawn to me. You will find your own reminder with time. Thoughts and prayers,
Laura Prator Maxwell

There are no words- except how God must love all of you to give you such a gift!

As Phoebe sails over the horizon to God’s loving arms, heaven is coming into view for her and she is coming into view to those on the shore. What a reunion there will be!
She will be waiting for you there-SAFE and SOUND and in perfect health.
God will give more and more grace for the days ahead: fresh and new each day

Five months ago, a very good friend of mine lost his 1 year old daughter only two days after finding out she had brain cancer–they had just flown to kenyan a month prior with their three sons and one daughter to become medical missionaries. They are also blogging about their faith, their journey, and daily life and just today Aaron blogged a children’s book that he felt led to write down that tells of their princess and how she received her invitation to the palace before they did…. (this is a link to his blog…) http://www.aaroninkenya.com/2013/09/visit-with-the-king/

I only know your family through your blog, but I will continue to lift you all to the Lord in prayer. May the Lord continue to wrap you in His embrace.

Your daughter is a miracle. Thank you for sharing your journey. You are in my thoughts and prayers. I hope you write a book. God has gifted you. May God continue to show his presence to you and your family.

Amey,
You don’t me but I’ve been keeping up to date on your precious girl’s journey. My heart is broken for you and your family as you navigate this pain and suffering. Phoebe is so beautiful and such a strong kid! I’m praying for your heart as you anticipate the days ahead… that God’s Grace would truly be sufficient, and His Love and assuring peace would surround you, and that you will “feel” it.

ps. I’m sitting next to my little girl in PICU as I type… she has special needs. Being here prompted me to actually write something to you.